a new parent’s guide to down syndrome

The Down Syndrome Association of Greater Cincinnati has been supporting families of children with Down syndrome since 1981. Our hope is that the information in our A New Parent’s Guide to Down Syndrome publication will help you to begin to understand Down syndrome and help you to see your baby’s great potential.

The emotions that you are experiencing right now are probably intense. These emotions are very typical when you learn that your newborn is not what you had anticipated. Although the needs of your baby may seem overwhelming to you right now, let us reassure you that your baby is more like than unlike other babies. Your little one will bring you many happy moments and there will be many occasions for celebration.

You can count on us to help. We are here to offer you the information and support that will assist you during these early days. Based on your comfort level and individual request, we can:

• IntroduceyoutoourEarlyMattersCoordinatorwhohashelpedhundredsof families in your shoes.

• Connectyouwithotherfamilieswithchildrenfrombirth-5yearsoldwho can offer you the personal support from the perspectiveof someone who can easily recall the feelings andemotions that you may be experiencing.

• MailbookstoyoufromourLendingLibraryaboutyour new child free of charge.

• Connectyouwithotherlocalagenciesthatcanhelpyou-includingtheJaneandRichardThomasCenterfor Down Syndrome at Cincinnati Children’s HospitalMedicalCenter,earlyinterventionprogramsandother state & county programs.

• Sendyoupacketsofinformationspecifictograndparents,relatives, and a general packet about Down syndrome.

• Sendyouourmonthlye-newsletter&quarterlymagazine,dspress.

• Visityouwithabasketfullofgiftsforyouandyourbaby.

Asonemothersaid,“ThebestphonecallIevermadewastotheDSAGC.”

Take time to get to know your baby. When you are ready, contact us. We can help.

Congratulations on the birth of your baby!

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A baby is a baby first.

What is Down Syndrome?Down syndrome is a genetic condition, and is the most commonlyoccurringchromosomalabnormality.Itoccurs in 1 out of every 691 births and affects people of all races and economic levels. Typically, babies receive 23 chromosomes from their mother and 23 from their father. A baby with Down syndrome, for unknown reasons, will have three copies of the 21st chromosome instead of two. That is why DownsyndromeisalsocalledTrisomy21.Everycellwillcontain 47 instead of the typical 46 chromosomes. This extra genetic material will affect your baby’s development, however, a baby has also inherited many physical and personality characteristicsfromyouaswell.Adefinitivediagnosiscanonlybemadewithakaryotype,whichisavisualdisplayofyourbaby’schromosomes.IntheUnitedStatesthereareapproximately350,000individualslivingwithDownsyndrome.Theseindividualsareactive,vital members of their families and communities. A life with Down syndrome is a life well worth living.

People First LanguageAbabybornwithDownsyndromeisnota“Down’schild”ora“babywithDowns”.Whendescribingyourchild,itispreferredthatyousay,he/sheisa“babywithDownsyndrome”.Anexampleis:“CharliehasDownsyndrome.”NOT“CharlieisthatDown’skid.”

People-FirstLanguageemphasizestheperson,notthedisability.Byplacingthepersonfirst,thedisabilityisnolongertheprimary,definingcharacteristicofanindividual,butoneofseveralaspects of the whole person. A child is much more than a label. People-FirstLanguageisanobjectivewayofacknowledging,communicating,andreportingondisabilities.Iteliminatesgeneralizationsandstereotypesbyfocusingonthepersonratherthanthedisability.People-FirstLanguageputsthepersonbeforethedisability,anddescribeswhatapersonhas,notwhoapersonis.Usingadiagnosisasadefiningcharacteristicreflectsprejudice,andalsorobsthepersonoftheopportunitytodefinehim/herself.

Please help to educate your family, friends and physicians about the preferred way to refer to your baby.

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Congratulations on the birth of your baby!

1 2 32 Group 4-5 ( B Group )

19-20 ( F Group )

13-15 ( D Group )( E Group )

17-1816

6-12 ( C Group )

21-22 ( G Group )

x x

Welcome to Holland ByEmilyPerlKingsley

Iamoftenaskedtodescribetheexperienceofraisingachildwithadisability-totrytohelppeoplewhohavenotsharedthatuniqueexperienceunderstandit,andtoimaginehowitwouldfeel.It’slikethis......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - toItaly.Youbuyabunchofguidebooksandmakeyourwonderfulplans.TheColiseum.TheMichelangeloDavid.ThegondolasinVenice.YoumaylearnsomehandyphrasesinItalian.It’sall very exciting.

Aftermonthsofeageranticipation,thedayfinallyarrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in andsays,“WelcometoHolland.”

“Holland?!?”yousay.“WhatdoyoumeanHolland??IsignedupforItaly!I’msupposedtobeinItaly.AllmylifeI’vedreamedofgoingtoItaly.”

Butthere’sbeenachangeintheflightplan.They’velanded in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting,filthyplace,fullofpestilence,famineanddisease.It’sjustadifferentplace.

So you must go out and buy new guide books. You must learn a whole new language. You will meet a whole new group of people you would never have met.

It’sjustadifferentplace.It’sslower-pacedthanItaly,lessflashythanItaly.Butafteryou’ve been there for a while and you catch your breath, you

look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...andthey’reallbraggingaboutwhatawonderfultimetheyhadthere.Fortherestofyourlife,youwillsay“Yes,that’swhereIwassupposedtogo.That’swhatIhadplanned.”

And the pain of that will never, ever, ever, ever go away... becausethelossofthatdreamisaverysignificantloss.

But... if you spend your life mourning the fact thatyoudidn’tgettoItaly,youmayneverbefreetoenjoytheveryspecial,theverylovelythings... about Holland.

©1987byEmilyPerlKingsley.Allrightsreserved

Celebrating Holland - I’m Home By Cathy Anthony

IhavebeeninHollandforoveradecadenow.Ithasbecomehome.Ihavehadtimetocatchmybreath,tosettleandadjust,toacceptsomethingdifferentthanI’dplanned.IreflectbackonthoseyearsofpastwhenIhadfirstlandedinHolland.Irememberclearlymyshock,myfear,myanger,thepainanduncertainty.Inthosefewyears,ItriedtogetbacktoItalyasplanned,butHollandwaswhereIwastostay.Today,IcansayhowfarIhavecomeonthisunexpectedjourney.Ihavelearnedsomuchmore.But,thistoohasbeenajourneyoftime.

Iworkedhard.Iboughtnewguidebooks.IlearnedanewlanguageandIslowlyfoundmywayaroundthisnewland.Ihavemetotherswhoseplanshadchangedlikemine,and who could share my experience. We supported one another and some have become my special friends.

Some of these fellow travelers had been in Holland longer thanIandwereseasonedguides,assistingmealongtheway.Manyhaveencouragedme.Manyhavetaughtmetoopenmyeyestothewonderandgiftstobeholdinthisnewland.Ihavediscovered a community of caring. Holland wasn’t so bad.

IthinkthatHollandisusedtowaywardtravelerslikemeandgrewtobecomealandof hospitability, reaching out to welcome, to assist and to support newcomers like meinthisnewland.Overtheyears,I’vewonderedwhatlifewouldhavebeenlikeifI’dlandedinItalyasplanned.Wouldlifehavebeeneasier?Wouldithavebeenasrewarding?WouldIhavelearnedsomeoftheimportantlessonsIholdtoday?

Sure,thisjourneyhasbeenmorechallengingandattimesIwould(andstilldo)stomp my feet and cry out in frustration and protest. And, yes? Holland is slower pacedthanItalyandlessflashythanItaly,butthistoohasbeenanunexpectedgift.I

have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland withitstulips,windmillsandRembrandts.

IhavecometoloveHollandandcallithome.

Ihavebecomeaworldtraveleranddiscoveredthatitdoesn’t matter where you land. What’s more important is whatyoumakeofyourjourneyandhowyouseeandenjoy

the very special, the very lovely, things that Holland, or any land, has to offer.

Yes,overadecadeagoIlandedinaplaceIhadn’tplanned.YetIamthankful,forthisdestinationhasbeenricherthanIcouldhaveimagined.

5©1987 by Emily Perl Kingsley. All rights reserved

Getting To Know Zoe

BesidesaPrinceCharmingofahusband,I’vewantedadaughtersinceIwaselevenyearsold.Twentyyearsandtwosonslater,mydearestwishwasfinallygranted.ThetremendousjoyIfeltturned out to be short lived. When my baby girl, Zoe, was eight hours old they gave me her diagnosisofDownsyndrome.Iwascompletelydevastated.Itrulybelievedthatmyfamily’sliveswereruined,notjustforthemoment,butpermanently.

Itfelttomeasifsomeonehaddied.ImournedthegirlIhadalwaysimaginedhaving.Ikeptwishingwecouldjusttryagainandpicturedabigbubblegummachinefullofbabiesinpinkandblueplasticballs.Iwasn’tthesortofmomitseemedthisbabywouldneed.

I’msharingthiswithyoubecauseI’velearnedoverthepastthreeyearsthatthisishowalotofnewmothersfeelwhentheyhearthediagnosisofDownsyndrome.Itwouldhavebeenpricelesstometohavehadabetterunderstandinginthosefirstweeks.SomethingtofueltheworriesintohopeandrekindletheexcitementIhadaboutnurturingatinylife.Likemyself,youmaynotevenrealizethereismuchmoretoyourbaby’slife.HerearethingsIhavelearnedwhile getting to know Zoe.

She can learn…a lot! Iremembertellingmyboysthattheirnewsisterwouldn’tbe able to learn like they do. This is a common misconception about children with Down syndrome. Overall she is about a year behind in her abilities, but she has so many important skills. She can match shapes, use two word phrases, sing songs and pretend play with her dolls.

ChildrenwithDownsyndromegotoschool,read,havejobs,drive,andbecomevaluablemembersofsociety.Theyarejustlikeourtypicalkids.ThedifferenceI’veseenwithZoeisthatthepaceisslower,butIfeellikesheishittingallofthesamekeypointsthattheboys accomplished and it is a thrill to succeed with her.

She was a real baby! SomehowIthoughtthatZoewasgoingtorobmeofthejoysofhavingababyinthehouse.Ilearnedthatshewasa100%realbaby!Shewascuddlyandgoodforlongnapsonthe couch. She made delighted baby noises when she saw herself in her crib mirror.Greatvictoriescameintheformofherfirstturnover,herfirstcrawl,andherfirstgameofpeek-a-boo.Itwasallthere!Herlowmuscletonemadethesemilestonescomeslowerthanthey did for my boys, but she made steady progress toward them until reaching them.

She is a best friend, not a burden. Sheisthelightest,pinkestjoyinourhouse.ShehasanincrediblysharpsenseofhumorandasweetmagnetismthatI’veoftenwishedIcouldcopyinmyownpersonality.Shelearnsroutinesandhasrecentlystartedfeeding herself. She does empty her dresser drawers and pinch her brothers through the backoftheirdiningroomchairs,butIdon’tthinkthisisduetoherdiagnosis!

She has not been made fun of or mistreated.Zoeisamagnet.Iambetterconnectedtotheworldbecauseofherpowertodrawpeopletoherwithabigsmileontheirface.Sheisfriendly,butstronglyindependent,andIamsureshewillhandleconflictsasshedevelopsinthesamewaythatmyboysdo.

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ByJennieMejan

Five Things I Wish I Had Known When My Daughter Was Born With Down SyndromeByAmyJuliaBecker

Sevenyearsago,onDecember30th,ourfirstborndaughtercameintotheworld.Itwasaneasydelivery—alittleearly,butnotpremature,nosignsofdistressortrouble,justashockofblack hair and a puffy face, and eyes the color of the sea on a cloudy day. But two hours after Penny was born, we learned that she had Down syndrome, the presence of a third copy of chromosome 21 in every cell of her body. We thought we had been given terrible news.

Now,Ilookbackonthatyoungmother,andIwanttobeabletoholdherhandandlookintoherfrightened,angry,sorrowfuleyesandtellhernotjustthatitwillallbeokay.Iwanttotellherwhyitwillbemorethanokay.Iwanttotellherhowherdaughterwillchangeherlifeinwaysshenevercouldhaveexpected.Iwanttotakeherworryandgriefandconfusion.IfIcould,hereiswhatIwouldsay:

You think Down syndrome means tragedy, and people will compare yourexperience to that of losing a child in a car accident or to cancer or some other horrible fate. Andthoughyouwillexperienceasenseofloss,youwillrealizeeventuallythatyouhavelostahypothetical child, and that the child right in front of you, this child, with her sparkling eyes and crookedteethandwarmsofthand,thischildisablessing.Intime,becauseoftheprivilegeofknowingandlovingher,youwillrealizethatyourgriefhasturnedtogratitudeandthatyourworry has turned to wonder.

You think Down syndrome means isolation, but you will discover that itbringsaworldofconnections.It’snotonlythatyouwillnowfeelabondwithotherparentsofchildrenwithDownsyndromethroughoutthecountryandaroundtheglobe.It’sthathavingachild who looks and acts somewhat different from what you expected, a child who you see as beautifulandfunnyandkindandsmartandbrave,willhelpyoutorecognizethatsamebeautyin everyone else. You will think your world has become smaller, when it has only begun to grow.

You think that Down syndrome means hardship, for you and yourdaughter. As with any child, you’re right. There will be sleepless nights. There will be doctor’s visits.Therewillbeatimewhenyoufindhersittingupinbedwitheyessunkenintoherheadfromdehydrationafterastomachflu,andyouwillrushhertothehospitalandshewillstayfor two days. There will be meetings with her teachers who talk about behavior plans. You will worryaboutherhealth,herabilitytomakefriends,herfuture.Andyetyouwillalsorealizethateverylifearriveswithhardship.Andeverylifearriveswiththepotentialforinexpressiblejoy.

You think Down syndrome means special treatment, and otherpeople will, with very good intentions, treat her as if she can’t learn and can’t sit still and can’t communicate. But you will believe in her abilities, and you will discover that she can sit in time outjustlikeherlittlebrother.Thatshecancommunicatethroughsignlanguagebeforesheisable to talk with words. That she will work harder than any kid you’ve ever known as long as she is motivated, and that even though it takes longer for her, she will learn—to read, to swim, to tie her shoes, to ride a bike, to use gentle hands with her baby sister. You will learn not to treat her as special, but as her own person, with particular struggles and particular gifts.

You think Down syndrome means giving more than you have to give, and some days it will feel that way, as it will with each of your children. But thenshewillcomeovertoyou,withyourheadinyourhandsafterafightwithyourson,andshewillsay,“Mom,shouldwepray?”Shewillcomehomefromschoolandembraceyouandsay,“IhadahappydayMom!”Shewillgivebackfarmorethanshehasevertaken.

She will break your heart. Wide open. And you will be forever grateful.

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What Does the Future Hold For My Baby?Sinceourorganizationwasfoundedin1981,tremendousadvanceshavebeenmadetoimprovethelives of our children in many areas including education, inclusion, social acceptance, healthcare, employment,housingandopportunitiesforafulfillinglife.Whilethereisstillmuchtobedone,weareencouraged as we look to the bright future that lies ahead for babies born with Down syndrome today.

Improved Access to Medical Care -ItisnowroutineforababybornwithDownsyndrometoreceive an echocardiogram shortly after birth. This painless procedure allows the doctor to determine ifthebaby’sheartisfunctioningwell.Thisisveryimportantsince50%ofbabiesbornwithDownsyndrome will have a heart defect. The good news is that these defects are extremely treatable and the prognosis is very good. To assist your baby’s doctor, we have provided the Healthcare Guidelines for IndividualswithDownSyndromeinthisbook.

Improved Educational Opportunities -In1975,CongressenactedtheEducationforAllHandicappedChildrenActorIndividualswithDisabilitiesEducationAct(IDEA).Priortothat,schoolswerenotlegallyresponsibletoeducateourchildren.Inaddition,federallawmandatesthatallofourchildrenhaveaccesstoearlyinterventionprograms.Manyofourchildrenareeducated alongside their typical peers within their public schools and provided with special education services. Students are graduating fromhighschoolandsomeareevenpursuingpost-secondaryopportunities. The DSAGC is actively involved in assisting teachers in their efforts to maintain inclusive classrooms.

Increased Independence -Thebenefitsofimprovedhealthcareand enriching educational opportunities have resulted in people with Down syndrome leading full lives as contributing members of society. As a result, people born today with Down syndrome have a life expectancy of over60years.Manyholdjobs,paytaxesandareactivemembersoftheircommunities. Today, the future is bright for your baby because of all the wonderful families and professionals who have helped pave the way.

Noonecanknowforcertainwhatthefutureholdsforanybaby,butthestaffandfamiliesoftheDSAGCareheretohelpyourbabyachievehis/herownuniquepotential every step of the way.

Next Steps…. Where Do We Go From Here?• Get to know your baby and welcome him/her into your family.• Contact the Down Syndrome Association of Greater Cincinnati (513-761-5400).

We can help you get started with early intervention services and get connected with other families.

• Make sure your baby has been scheduled for an echocardiogram.This is usually performed at Children’s Hospital.

•

• Centerfor

Schedule an appointment with your pediatrician to discuss anymedical concerns & walk through the Health Guidelines in this book. Consider making an appointment with the Thomas Center for Down Syndrome at Children’s Hospital Medical Center for a developmental assessment and care coordination.

• You may want to meet with the genetics department to discuss chromosomal test results.• Contact your Early Intervention Services, see pages 10 & 11.• For Ohio residents only, apply for the Children with Medical Handicaps Program (CMH or BCMH).

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BreastfeedingBreast milk helps protect your baby from infection as it provides immune protectionnotfoundinformula.Itisalsoeasiertodigestmakingstooleasytopasswhichmaybehelpfulifyourbabyhasabowelproblem.Itwillstimulatemouth and tongue coordination which may improve speech skills.

However, it can also provide challenges due to your baby’s low muscle tone, weakerreflexesandtendencytotireeasily.ManymothershavesuccessfullybreastfedtheirinfantswithDownsyndrome.Ifyoufindyouarehavingdifficultywecanconnectyouwithanothermotherorprofessional who can assist you.

Feedoften-8ormoretimesin24hoursincludingsomeduringthenight.Youmayneedtowakebabytofeed.Lookformouthorhandmovementwhichusuallymeanstheinfantisinalightersleepandwillwake more easily. A baby with low muscle tone usually sucks better when the head and bottom are level,orclosetoit.Supportyourbabyusingpillowsonyourlap.Ifbabyarcheshisbody,trytoholdthebodyflexed,withkneesbentandspinerounded.Swaddlinginablanketinaflexedpositioncanalsohelp.Otherhelpfulpositionsaremodifiedcradlehold,footballholdordancer-handposition.Please refer to photos on website www.childrensmn.org and search for Down syndrome.

Herearesomethingstowatchforinthefirstweekafterbirth:

Takecareofyourself.Patienceisimportant.Ifyouarecomfortable and well supported physically and emotionally, you will have more energy for baby.

We value the right of every mother to choose which method of nursing is best for her and her baby whether it be breastfeeding, bottle feeding or pumping breast milk. The DSAGC is here to provide support and information to all mothers.

Days after birth Wet diapers Stool color Number of stools (atleastthismanyin24hrs) (atleastthismanyin24hrs)

1stday 1 Greenish-black

2ndday 2 Greenish-black 1- 2stools

3rdday 3 Yellow,softer 2-4stools

4thday 4 Yellow,softer 3-5stools

5thday 5 Yellow,soft,seedy 3-5stools

Adapted from information provided by Children’s Hospitals and Clinics of MN, Minneapolis and St. Paul.

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Early Intervention ServicesThefirstyearsoflifeareacriticaltimeinachild’sdevelopment.Allyoungchildrengothroughthemostrapidanddevelopmentallysignificantchangesduringthistime.Duringtheseearlyyears,theyachievethebasicphysical,cognitive,language,socialandself-helpskillsthatlaythefoundationforfuture progress, and these abilities are attained according to predictable developmental patterns. Children with Down syndrome typically face delays in certain areas of development, so early interventionishighlyrecommended.Itcanbeginanytimeafterbirth,butthesooneritstarts,thebetter.Earlyinterventionisafreeofchargeservicethatworkswithchildren0–3yearsold.Atage3,achildiseligibletostartpre-schoolthroughthelocalschooldistrict.Thelocalschooldistrictismandated by a law to provide free and appropriate public education.

What is Early Intervention?Earlyinterventionisasystematicprogramoftherapy,exercisesandactivitiesdesignedtoaddressdevelopmental delays that may be experienced by children with Down syndrome or other disabilities. TheseservicesaremandatedbyafederallawcalledtheIndividualswithDisabilitiesEducationAct(IDEA).Thelawrequiresthatstatesprovideearlyinterventionservicesforallchildrenwhoqualify,with the goal of enhancing the development of infants and toddlers and helping families understand and meet the needs of their children. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy and occupational therapy.

How Can Early Intervention Benefit A Baby With Down Syndrome?Development is a continuous process that begins at conception and proceeds stage bystageinanorderlysequence.Therearespecificmilestonesineachofthefourareasofdevelopment(grossandfinemotorabilities,languageskills,socialdevelopmentandself-helpskills)thatserveasprerequisitesforthestagesthatfollow.Mostchildrenareexpectedtoachieveeachmilestoneatadesignatedtime,alsoreferredtoasa“keyage,”whichcanbecalculatedintermsofweeks,monthsoryears.BecauseofspecificchallengesassociatedwithDownsyndrome, babies will likely experience delays in certain areas of development. However,theywillachieveallofthesamemilestonesasotherchildren,justontheirowntimetable.InmonitoringthedevelopmentofachildwithDownsyndrome,itismoreusefultolookat the sequence of milestones achieved, rather than the age at which the milestone is reached.

What Are the Types of Early Intervention Therapies and How Does Each Type Address Specific Aspects of A Baby’s Development?Beforebirthandinthefirstmonthsoflife,physicaldevelopmentremainsanunderlyingfoundationforallfutureprogress.Babieslearnthroughinteractionwiththeirenvironment.Inordertolearn,therefore, an infant must have the ability to move freely and purposefully. An infant’s ability to explore

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his or her surroundings, reach and grasp toys, turn his or her head while watchingamovingobject,rolloverandcrawlarealldependentupongrossaswellasfinemotordevelopment.Thesephysical,interactiveactivities foster understanding and mastery of the environment, stimulating cognitive, language and social development.

Physical therapyfocusesonmotordevelopment.Forexample,duringthefirstthreetofourmonthsoflife,aninfantisexpectedtogainheadcontrolandtheabilitytopulltoasittingposition(withhelp)withnohead lags and enough strength in the upper torso to maintain an erect posture. Appropriate physical therapy may assist a baby with Down syndrome, who may have low muscle tone, in achieving this milestone.

Anotherlongtermbenefitofphysicaltherapyisthatithelpspreventcompensatory movement patterns that individuals with Down syndrome are prone to developing. Such patterns can lead to orthopedic and functional problems if not corrected.

Speech and language therapyisacriticalcomponentofearlyintervention.EventhoughbabieswithDownsyndromemaynotsaytheirfirstwordsuntil2or3yearsofage,therearemanypre-speechandpre-languageskillsthattheymustacquirebeforetheycanlearntoformwords.Theseincludetheabilitytoimitateandechosounds;turntakingskills(learnedthroughgameslike“peek-a-boo”);visualskills(lookingatthespeakerandobjects);auditoryskills(listeningtomusic,speechorspeechsoundsforlengthenedperiodsoftime);tactileskills(learningtotouch,exploringobjectsinthemouth);oralmotorskills(usingthetongue,movinglips);andcognitiveskills(understandingobjectpermanenceandcauseandeffectrelationships).

Occupational therapy helps children develop and master skills for independence. Occupational therapy can help with abilities such as opening and closing things, picking up and releasing toys of varioussizeandshapes,stackingandbuilding,manipulatingknobsandbuttons,experimentingwithcrayons, etc. Therapists also help children learn to feed and dress themselves and teach them skills for playing and interacting with other children.

The overarching goal of early intervention programs is to enhance and accelerate development by building on a child’s strengths and by strengthening those skills that are weaker in all areas of development.

How Do I Sign-Up for Early Intervention Services? Eachstatehasitsownsetoflawsgoverningearlyinterventionservices.Parentscangetareferralfromtheirbaby’sdoctororfindalocalagencybyvisitingwww.nectac.org.Onceareferralhasbeenmade,theprogramstaffmustscheduleandcompleteaninitialevaluationwithinaspecifiedtime. Once the assessment is done, a caseworker is assigned to coordinate the various services for whichthebabyandfamilyqualify.Earlyinterventionservicesareindividualizedtomeetthespecificneeds of each individual baby. The caseworker, therapists and family will determine areas of focus and set goals based on developmental milestones. These will be recorded in a document called the IndividualizedFamilyServicePlan(IFSP).

OHIOAdamsCounty:937-544-2574 BrownCounty:937-378-4891 ButlerCounty:513-785-2800ClermontCounty:513-732-4832 ClintonCounty:937-382-7889HamiltonCounty:513-794-3300HighlandCounty:937-393-4237 WarrenCounty:513-695-3010

INDIANADearbornCounty:812-283-1040 FranklinCounty:765-288-6516RipleyCounty:812-283-1040

KENTUCKYAllNorthernKentuckyCounties(Boone,CampbellandKenton)877-417-8377orchfs.firststeps@ky.gov

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Health GuidelinesOne of the main questions on the minds of many new and expectant parents is, “Will my baby behealthy?”ItisimportanttonotethatmanybabieswithDownsyndromearebornwithoutanyhealth problems.However, it is true that newborns with Down syndrome are at a higher risk for certain complications. While your baby may not have any of these potential complications, it is important to be aware of them so you can catch them early if they do occur. This section discusses possible health concerns and useful tools for monitoring your child’s health care. TheDSAGCstronglysuggeststhatyoubringtheseguidelinestoyourfirstpediatricappointmentasaguideofwhattoexpect,aswellaswhattorequestifnotoffered.Requestingthatyourpediatrician uses these guidelines does not make you an overbearing parent, but an advocate for your child. And while your pediatrician may be a wonderful physician, he or she may not be familiar with the most current guidelines.

Health Care Information for Families of Children with Down Syndrome Child’s Age: Birth to 1 Month Genetic testing IfthephysicalexaminationafterbirthraisesthepossibilityofDownsyndrome,testingbyrapid(FISH)confirmationandacompletechromosomeanalysisareneeded. The rapid analysis results are typically available within 48 hours, whereas the completeanalysismighttake35daysfortheresults.Acompletechromosomeanalysisisneeded to provide full information, but to ensure prompt results, both should be obtained unless the complete analysis can be done as quickly as the rapid analysis. Counseling The prenatal or newborn diagnosis of Down syndrome can cause many concernsforparents.Talkingwithamedicalgeneticsteam(medicalgeneticistandgeneticcounselor)orothersrecommendedbyyourchild’sdoctormaybehelpful.FeedingInfantswithDownsyndromesometimeshavelowmusclecontrol,whichcancausefeedingproblems.Forthisreason,infantsshouldbecloselywatchedforslowfeedingorchoking and for appropriate weight gain. Breastfeeding is strongly encouraged, but extra attention may need to be given to positioning and keeping the baby awake or alert.Heart Anechocardiogram(anultrasoundpictureoftheheart)isneededtocheckforanyevidence of heart defect. This should be done even if a prenatal echocardiogram was done. Ifissuesexist,itisveryimportanttoactearly.Breathingthatistoofastorcyanosis(abluishcoloroftheskin)aresignsforpossibleconcern.Hearing and vision InfantswithDownsyndromeareatriskforsensoryissues,suchaseyeproblemsleadingtovisionlossorearproblemsleadingtohearingloss.Itisimportanttohavebothvisionandhearingcheckedbyspecialists(ophthalmologyandENT).ThyroidThyroidhormonelevelscanbetoolowinnewbornsandneedtobechecked(aTSHtest).Thyroidhormoneimbalancecancauseavarietyofproblemsthatmightnotbeeasytodetect without a blood test.Blood test After birth, white and red blood cell counts can be unusually high in infants with Down syndrome. These blood counts need to be checked. Stomach orbowelproblems(reflux,constipation,blockages)Intestinalissuescanoccur.Spittingup,stomach swelling, or an abnormal stool pattern can be signs that there is an issue.InfectionBecauseofanincreasedriskofinfections(especiallyrespiratoryinfections),infantsshouldbeprotectedfromanyunnecessaryexposurestosicksiblings,relatives,orothers.Itisalsorecommended to get checked quickly when any infection is suspected.Developmental servicesItisnottooearlyinthefirstmonthoflifetostarttolookforthedevelopmentalservices(sometimescalled“EarlyIntervention”)thatwillbeveryimportantinearlychildhood.ResourcesFamiliesofchildrenwithDownsyndromewillneedmultipleresources,andnowisagoodtimetostartliningthemup.Suchresourcesmightincludespecializedmedicalcare,earlyintervention, physical therapy, and family counseling services.

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Health Care Information for Families of Children with Down Syndrome Child’s Age: 1 month to 1 yearFollowuponknownproblemswithspecialistsandbesurethatreportsaresenttoyourchild’sprimary doctor.

Regular wellness visits(check‐ups)WhileinfantswithDownsyndromemightneedmultiplespecial visits to their doctor and specialty physicians, it is very important that they get regular wellnessvisits(check‐ups).Thesevisitswillincludecheckingyourchild’shealth,givingimmunizations(shots),andbuildingtherelationshipsbetweenthedoctorandthefamily.Developing these relationships will help support the medical and other needs of the child and the family.Monitor growthItisimportanttocheckgrowthateveryvisit.Measurementsincludeheight,weight, weight for height, and head circumference. Discuss your child’s diet, activity level, bowel and urine patterns, and growth. Your child’s doctor can help with questions about any need for vitamins or supplements.Immunizations (shots)Yourchild’sdoctorshouldfollowthesameshotscheduleasforanyotherchild.Thisincludesyearlyinfluenza(flu)shots.Itmayincludeothershots,too,depending on your child’s health history.HeartIftherewereanysignsofheartdefectinthefirstmonthoflife,heartmonitoringisprobablyalreadyinplace.Heartproblemscouldstillworsenornewonescouldarise.Ifconcernsexist,itisveryimportanttoactearly.Breathingthatistoofastorcyanosis(abluishcoloroftheskin)aresignsforpossibleconcern.Hearing and vision InfantswithDownsyndromeareatriskforeyeproblemsleadingtovisionlossorearproblemsleadingtohearingloss.Itisimportanttohavebothvisionandhearingcheckedbyspecialists(ophthalmologistandotolaryngologist/ear,nose,andthroatdoctororENT).Theeyesshouldbetestedatbirthandagainat1yearorsoonerifthereareconcerns. Hearing should be tested at birth and again every 6 months in early childhood to be sure that the baby’s hearing is the best possible. Thyroid Thyroidhormonelevelscanbetoolowininfantsandneedtobechecked(aTSHtest).Lowthyroidlevelscancauseavarietyofproblemsthatmightnotbeeasytodetectwithout a blood test. A TSH should be obtained at birth and again at age 6 months and 1 year.Stomach orbowelproblems(reflux,constipation,blockages)Intestinalissuescanoccur.Spitting up, stomach swelling, or an abnormal stool pattern can be signs that there is an issue.Neck instability Bones in the neck or spine can be unstable in some people with Down syndrome. There are almost always visible signs when there are problems. Daily physical activityisimportanttoyourchildandshouldnotbelimitedbyunneededworries.X‐raysarenot needed unless there is pain or changes in the use of hands, walking, or bowel or bladder function.Ifxraysaredoneandtheresultsareabnormal,yourchildmaybereferredtoaspineorneckspecialist.Itisrecommendedthattheneckbepositionedproperlyforanymedical procedures.Developmental servicesDevelopmentalservices(forexample,earlyinterventionprograms)canbeofgreatbenefittothefamilywithachildwithDownsyndrome.Developmental services can also help arrange for other related services. These services should provide information to your child’s doctor to maintain a close working relationship with the doctor and the family. Social support servicesManyfamiliesneedadditionalhelpwiththe issues that can arise with the care of children with Down syndrome. All families should discuss with their doctor or local Down Syndrome Association the social services that may be availableandtheirbenefits.Recurrence risk counselingFamiliesshouldgetcounselingabout the possible risk of having another child with Down syndrome, if they choose to have more children. While the risk is usually low, other factors in the family history might be present, so counseling should be done after a complete review of the family history.

For complete healthcare guidelines 5 years & beyond, visit www.dsagc.com/healthcareguidelines (ReprintedwithpermissionfromtheNationalDownSyndromeSocietyandTheAmericanAcademyofPediatricians)

Ifyouhaveotherchildrenandyouareinterestedinreceivinga“SiblingPacket”,pleaserequestthisfromtheEarlyMattersCoordinator.Thispacketwillgiveyouinformationabout the appropriate steps and conversations to have with your other children about Down syndrome at the appropriate age. There is also information in this packet about books that may help reinforce the discussion.

My Sister Nora ByRachelDonohue

MynameisRachelandIam11yearsold.Mysister,Nora,is2yearsoldand has Down syndrome. She’s the cutest baby in the world. You alwayswonder,“Whatwouldwedowithouther?”She’sthemostplayful baby. We sit around and make her car go, and she says, “Vroom,Vroom.”

NoralovestoplaywithstuffedanimalsandtowatchBarney.Shecandothehandmotionstothesongs.I’macheerleaderandwhenIsaythecheershemovesherarmslikeme.

Norahasbeensickabout4times,and3ofthosetimesshewasinthehospital.WhenNorawenttothehospital,Iwassoscaredbecauseshewasonlyababy.Iknewitmeantthatshemustbereallysick.She’smy baby sister and when you look at her you wonder what she feels like. Whenshewasbetter,allIcoulddowashugandkissher.

IwouldsaythatmyrelationshipwithNoraisawesome!Iwilldoanythingforher.WhenIfeelsadorunhappy,Noraalwayswillbrightenmyday.Youlookatherandjustsmile.WhenshewasfirstbornIwasn’tsurewhattothink.WhenmyMomtoldmeshehadDownsyndromeIthought,“OK.Kidsatmyschoolhaveitanditdoesn’tbotherme.”ButitistotallydifferentwhenyourownsisterhasDownsyndrome.Iknowsometimespeopleusetheword“retarded”inabadway.IgetsoangrywhenIhearthatand Ialwaystellpeoplenottousethatword.Theyusuallydon’tmeanitinabadway, butitisstillmean.IlovemysisterwithallmyheartandIwouldn’tgiveherupforanything.Noraisthesweetestmostbeautifulpersonintheworld!

“Siblings will be in the lives of their brothers and sisters who have disabilities longer than anyone. Their relationship may span 60-80 years. Because of this siblings will have an enormous influence on their brothers and sisters.”

Don Meyer, Director, Sibling Support Project, Seattle

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I Can Do Anything

MynameisBobEffler.I’m31yearsold.Inafewyears,Iwanttomoveoutintoanapartmentbymyselforwitharoommate.IwanttoseeifIcanbemoreindependentanddostuffonmyown.

IworkataMedicalCenterinthetherapydepartmentandIamgreatatwhatIdo.Istraightenupthegymareaandgeticeandhotpacksforpatients.IlikemyjobandIlikeworkingwiththetherapistsandpatients.Inmysparetime,Iliketolistentocountrymusic.Ievenliketowritestoriesaboutcountrymusicandmakevideos with my friends on my computer.

Ilookuplyricsandlistentoclipsofsongs.Ialsolookupbiographiesof actorsandactresses.IcollectDVDsofoldTVshowsandhaveover300countryCDs.

OnSundayIgotochurch.Wetalkaboutgospelreadingsforupcomingservices,soweunderstand what the priest is talking about.

Igraduatedfromhighschoolin1995.Ilikedmyschoolbecauseitwasabigschool.Itookbothspecialeducationandregularclasses,likedrama,typing,andcomputer.Ilearnedhowtoworkwithspreadsheets.MyfavoritesubjectswereEnglishandHistory.Inhistorywelearnedaboutthingslikedealswithdifferent presidents and black history.

Letmetellyouaboutsomepeopleinmylife.Traceyismybestfriend. We talk on the phone, hang out together and go out to eat.Ihaveknownherfor14yearsthroughschool.MyfriendMike

usedtoswimwithmeatSpecialOlympics.Ialsohavealotof friends at work.

Iampassionateaboutsocietytodayandmakingadifference.Imaynotbefastbutthat’sokwithme.ImaydostuffalittleslowerbutIdon’tmind.WhenmyMomhadmein1975,thedoctorcameinandtoldherIwouldneverdomuchofanything.Iprovedhimwrong,becauseIcandoanythingIwantto.

ByBobEffler

Down Syndrome Association of Greater CincinnatiThe mission of the Down Syndrome Association of Greater Cincinnati is to empower individuals, educate families, enhance communities and together, celebrate the extraordinary lives of people with Down syndrome.The Down Syndrome Association of Greater Cincinnati (DSAGC) partners with families and others to create an environment in which individuals with Down syndrome are welcomed with fairness, enthusiasm, and encouragement in the community. We embrace inclusion at all levels of community life: schools, workplace, neighborhoods and churches. We believe that diversity should be embraced, not merely tolerated, because the entire community benefits when individuals with differences are valued.

Support At Every Age Early Matters – The Early Matters program provides support, networking

and information to expectant parents and parents with children ages birth to five years.

School Age Matters – The School Age Matters program addresses the unique concerns of children and adults attending school through education, inclusion and advocacy.Adult Matters – The Adult Matters program offers assistance and

educational resources for adult self-advocates and their caretakers.

Empowerment Classes & Social OpportunitiesEmpowerment classes are offered to individuals with Down syndrome of all ages and abilities and their families. These classes include sign language, kitchen skills, physical therapy, cheerleading and more! We also offer social opportunities such as social clubs, community outings, dance parties and family get-togethers.

Community Groups Community Groups create opportunities for families that have children with Down syndrome to network and share common interests, concerns, challenges and information. The groups do this through community events, informational meetings, playgroups and online chat groups.

Health OutreachThe DSAGC Health Outreach program provides healthcare information about Down syndrome to families in the form of books, articles, and referrals. This program also provides information about Down syndrome to pediatricians, obstetricians, nurses, social workers, genetic counselors, midwives and other healthcare providers seeking information.

Hospital Care PackagesIf your child is spending three or more days in the hospital, the Down Syndrome Association of Greater Cincinnati would love to support you during this difficult time. Please register to receive a Hospital Care Package on our website. We are thinking about you and hope that this small token will put a smile on your face. You will find meal tickets, snacks, cards/stamps, activities, books, etc.

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Advocacy The DSAGC is involved in advocacy work on behalf of children and adults with Down syndrome, their families and the Down syndrome community at large. Weeducatelegislatorsandlobbyfororagainstspecificpiecesoflegislationthat impact our families.

Buddy Walk® Withover11,000participants,CincinnatihoststhelargestBuddyWalk®inthe nation! The walk occurs each fall to raise funds and promote acceptance andinclusionofpeoplewithDownsyndrome.ItistheDSAGC’slargestfundraising event!

Resources for Families Website (www.dsagc.com)Our website provides esonvarioustopics,suchaspottytraining,behavioralissues,IEPs,housing,

waivers and more. The website also houses information about our upcoming programs and events.

DS Press

TheDSPressisaquarterlynewsletterthatreachesover2,500people.Itsharescurrentinformation about the DSAGC, articles relating to Down syndrome and upcoming calendar events.

E-Newsletters

Ourconstituentsreceiveanage-specific,bi-monthlynewsletterviae-mailwithupcomingeventsandothervalue-addedcontent.

Lending Library

TheLendingLibrarycontainsover600booksandDVDson various topics relating to Down syndrome, such as teaching strategies, medical concerns, social development, parenting and more.

iPad Rental

FamiliescanrentaniPadtoexplorevariousapplications within their own home and at their own pace.EachiPadhas40applicationsavailableforall ages and abilities.

Community Participation Fund

We offer scholarships to people with Down syndrome so that they can participate in community activities, such as camps, soccer or swim lessons. There are also scholarships for parents to attend educational meetings or conferences.

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Books

AllofthefollowingresourcesareavailableinourLendingLibrary.Wecontinuallyupdateourcollectionofbookstoprovide you with the most current and accurate information. Please visit our website at www.dsagc.com for more information.Useoursearchboxtofindtheinformationyouarelooking for or contact us for assistance.

Babies with Down Syndrome: A New Parent’s Guide KarenStray-Gundersen(1995)

Thousands of new parents and professionals have turned tothisbookfortheirfirstsourceofinformationonDownsyndrome.AlsoavailableinEspañol.Afreecopyofthisbookisgiven to all new parents in the DSAGC area.

Common Threads: Celebrating Life with Down Syndrome CynthiaKidderandBrianSkotko(2001)

This book is an essay and photographic celebration of inspirational accomplishments of people of all ages with Down syndrome.Throughoutthebookthereisacommonthread-the thread of belief that similarities outweigh the differences between children with Down syndrome and their peers.

Early Communication Skills for Children with Down Syndrome LibbyKumin(2003)

Dr.Kuminsharesherexpertisewithparentsandspeech-languagepathologiststohelpthemmaximizethecommunicationdevelopmentofyoungchildren.It focuses on speech and language development from birththroughthestageofmaking3-wordphrases.

Gifts KarenLynardSoper(Ed)(2007)

Inthiscandidandpoignantcollectionofpersonalstories,sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love which their child with Down syndrome has brought into their lives. Their diverse experiences point to a common truth: the life of a child with Down syndrome is something to celebrate.

Married with Special Needs Children LauraMarshakandFranPollockPrezant(2007)

This book is for parents to examine the stress that is often placed upon a marriage when a couple has a child with a disability.Inthispractical,supportiveguide,theauthorsdrawon their experience in marital counseling and feedback from hundreds of parents who share their solutions and secrets for a healthy relationship.

Resources My Friend Isabelle ElizaWoloson

A charming story about what makes a friendship.

Road Map to Holland JenniferGrafGroneberg(2008)

Personalaccountofamother’sjourneyfollowing the birth of twin sons, one of whom has Down syndrome.

Understanding Down Syndrome: An Introduction for Parents CliffCunningham(1996)

AlsoavailableinEspañol

A comprehensive book for parents of babies and young children. The author provides answers to the countless questions directed to him during his twenty years’ involvement with individuals with Down syndrome and their families.

You Will Dream New Dreams StanleyD.Klein,Ph.D.andKimSchive(2001)

Real-lifefathersandmothersofchildrenwithspecialneedsspeak from the heart on how they mourned for the child of their dreams, experienced the disappointment of letting go of certain expectationsandfoundtheunexpectedjoyofdiscoveringnewdreams.

Books for SiblingsWe’ll Paint the Octopus Red StephanieStuve-Bodeen

WhenbabyIsaacisborn,thefamilyisconfrontedwiththefactthathehasDownsyndrome.FatherexplainsthatIsaacwillstillbeabletodoallofthethingsthatbigsisterEmmahasthoughtof;hewilljustdothemataslowerpace.ThestoryendsonahighnotewithanexcitedEmmaandherfathervisitingIsaacand her mother in the hospital. ReadingLevelAges4-8

Living With a Brother or Sister with Special Needs DonMeyer

This book lends the voice of hope,confidenceandclarityto the experiences of many siblings of people with special needs.Itnotonlyshedslighton many questions that often crop up, it also provides a safe forum to explore any and all sibling related issues. ReadingLevelAges4-8

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Views From Our Shoes – Growing Up with a Brother or Sister with Special Needs DonaldMeyer Acollectionof45briefessaysbychildrenandyoungadultswho have a sibling with special needs, ranging from down syndrome through a number of rare syndromes. The writings are arranged in chronological order, from that of a 4 year old to an 18 year old. ReadingLevelAges8throughYoungAdult

DVDSDown Syndrome - The First 18 Months WillSchermerhorn(2003)

Heartwarming footage of young children with Down syndrome isinterspersedwithinterviewsofparentsandexperts.VeteranparentssharetheirjoysandconcernsonraisingababywithDown syndrome. An inspiring and educational video for parents who want to know more, and an excellent tool for support groups, medical professionals and libraries to support families.

Discovery - Pathways to Better Speech for Children with Down Syndrome WillSchermerhorn(2005)

This invaluable resource offers practical advice, examples, and expertise for parents and professionals to follow as they help children with Down syndrome from infancy to age seven become the best talkers they can be.

Websiteswww.ds-health.com — Created by pediatrician and parentofachildwithDownsyndrome,Dr.LenLeshin.

www.ndss.org —TheNationalDownSyndromeSocietywas founded in 1979 to promote a greater understanding of thescientific,medicalanddevelopmentalaspectsofDownsyndrome.

www.ndscenter.org —TheNationalDownSyndromeCongress was formed in 1972 to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

www.peakparent.org—ThemissionofPEAKParentCenter is to provide training, information and technical assistance toequipfamiliesofchildrenbirththroughtwenty-sixincludinganydisability with strategies to advocate successfully for their children.

www.cchmc.org—CincinnatiChildren’sHospitalMedicalCenter is dedicated to providing the highest level of pediatric care. As Greater Cincinnati’s only pediatric hospital, Cincinnati Children’s is committed to bringing the very best medical care to children in our community.

www.brightertomorrows.org — Providing families with balanced and accurate infromation about receiving a diagnosis of Down syndrome.

www.downsyndromepregnancy.org — Providing support for mothers during their pregnancy.

www.globaldownsyndrome.org — the Global Down SyndromeFoundationisdedicatedtosignificantlyimprovingthelivesofpeoplewithDownsyndromethroughResearch,MedicalCare,EducationandAdvocacy.

www.downsyndromediagnosis.org —NationalCenter for Prenatal and Postnatal Diagnosis of Down Syndrome Resources

www.imdsa.org —InternationalMosaicDownSyndromeAssociation

www.ndsan.org —NationalDownSyndromeAdoptionNetwork

CCHMC is also home to the Jane and Richard Thomas Center for Down Syndrome http://www.cincinnatichildrens.org/svc/alpha/d/disabilities/clinical/down-syndrome-center.htm which offers interdisciplinary evaluations and interventions for infants, children, adolescents and young adults.

OhioOrganizationswww.dsagc.com — Down Syndrome Association of Greater Cincinnati

www.dsaco.net — Down Syndrome Association of Central Ohio(Columbus)

www.dsav.org—DownSyndromeAssociationoftheValley(EasternOhio)

www.mvdsa.org—MiamiValleyDownSyndromeAssociation

www.theupsideofdowns.org—TheUpSideofDowns(NortheastOhio)

www.dsagt.org — Down Syndrome Association of Toledo

Kentucky/IndianaOrganizationswww.dsack.org — Down Syndrome Association of Central Kentucky

www.dsindiana.org—DownSyndromeIndiana

www.firstgiving.com/dssasi — Down Syndrome SupportAssociationofSouthernIndiana,

www.downsyndromeoflouisville.org — Down SyndromeAssociationofLouisville

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